Walkers raise awareness for extremely rare condition

Walkers turned out in force to raise awareness for an extremely rare condition.

Last week, the Pocklington Post ran a story about a brave youngster called Joshua, from near Huggate, who has Congenital Myotonic Dystrophy, which causes stiffening of the limbs.

Joshua’s legal guardian Sarah Ruane organised a sponsored walk across part of the Humber Bridge to make people more aware of the condition.

More than 70 people from across the country converged on the bridge for the event.

Sarah’s friend, Christine Mason, is raising funds for research into the condition and to pay for Joshua to travel to Utah University in America, where doctors have agreed to accept him onto a clinical trials programme for a new drug.

She said: “The event was very good. We got a much bigger turnout than expected.

“Since doing the walk we have had people both in the USA and the UK contacting us on Facebook. People have said that we are helping to bring this condition out into the open and they are finding that been able to talk to other parents with children with the same condition is so informative and also at the same time comforting to know that there are other children with CMD to whom they can talk to and get support.”

During the walk, which raised hundreds of pounds, 47 balloons were released on the bridge, one for each child in the UK and America that Sarah and Christine know have Congenital Myotonic Dystrophy

Among those who attended the walk was two-year-old Zack, from Featherstone, and 20-year-old Chantelle Jeffcoat, from Birmingham, who both have the condition.

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